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New diagnosis - rabbit in headlights

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User
Posted 14 Mar 2022 at 16:35

Originally Posted by: Online Community Member

No two people are the same, but if someone is reasonably fit and healthy then the surgery isn't such a big deal, providing the patient doesn't try to be a hero afterwards. Better safe than sorry. Based on the experiences I've seen on here, most patients with Gleason 7 largely regain continence after surgery. The unknown is ED, and the second unknown is how you both cope with the result - few over 60 appear to obtain full recovery.

thanks Peter51. Yes we’re hoping the continence will return and he can have a decent quality of life. As for the ED it’s going to be very unlikely, no nerve sparing on one side and 30-40% on the other. Surgeons says it be 3-4 years for ED to return if at all. It saddens me a great deal, for him, for me, for us, but would rather have him here. 

User
Posted 20 Mar 2022 at 18:45

Wishing your husband all the best for the week ahead. I hope everything goes smoothly and if I can help in any way through sharing our relative experiences ( since my op was late last week ) then do not hesitate to get in touch .

 My immediate advice is just to stay focused on the post op period , in a few days he will be on ‘the other side’ of the op and can channel energy into recovery.

Try not to get too anxious about the day itself , it takes care of itself and by the time he is checked in, meets the team, etc it will be op time before he knows it. ( they even made me walk from the admission area to the theatre πŸ˜‚ ). I know you will be anxious during the op, and what seemed a moment to me (thanks to the anaesthetic) may seem a lifetime to you, but although this is a major op, it’s a relatively routine one), and the surgeons are highly skilled.

I look forward to hearing news on progress. 

best wishes, GG

Edited by member 20 Mar 2022 at 18:50  | Reason: Not specified

User
Posted 21 Mar 2022 at 20:35

So here we are it's "surgeryeve".  We are as prepared as we can be.  Lets hope and pray Da Vinci works his magic tomorrow and we get the outcome we very much want.  Thank you all for the help, advice, lists of purchases and allaying some of our fears.  Will keep you posted when we are out the other end x

User
Posted 21 Mar 2022 at 21:14

Good luck I am sure you will be fine πŸ‘

User
Posted 21 Mar 2022 at 21:48

Hope all goes well. Don't forget the instilagel and extra thigh straps.πŸ‘

Thanks Chris

User
Posted 22 Mar 2022 at 00:16

Thinking of you both. I’m sure all will go really well xx

User
Posted 22 Mar 2022 at 09:04

By now you will be at Addenbrookes (you will have arrived by 7 am) and will have been told whether the surgery will be in the morning or afternoon.

Best wishes for the best outcome.

 

Ivan

User
Posted 22 Mar 2022 at 09:04

Thinking of you both today and OH will be home before you know it 

x 

User
Posted 22 Mar 2022 at 14:12
Good luck to you both today.
User
Posted 22 Mar 2022 at 19:51

It’s been a long day. Surgery went as planned with no complications. Hopefully he will be back on the ward soon and home tomorrow. He’s over the first hurdle! Phew! 

The support from this forum is priceless - a huge thank you from both of us x

User
Posted 22 Mar 2022 at 20:33

Good to hear keep in touch with his progress worst part over now onwards and upwards πŸ‘

User
Posted 22 Mar 2022 at 21:33

Originally Posted by: Online Community Member

Good to hear keep in touch with his progress worst part over now onwards and upwards πŸ‘

thanks Gaz, will do x

User
Posted 25 Mar 2022 at 08:19

How is OH doing now JayneyP? First couple of days done. Hope he is recovering? 

I tried replying to your message but your inbox is full so it won’t let me send it but put this - 

 

Yes it takes a while to settle down. His insides are all over the place at the moment. As long as he is eating and drinking that’s important. He will snooze lots as well. His insides could take up to a long time to heal. It’s not just the 7 holes on the outsides. 

Regarding the stockings…here is a tip to help you. You will have to do it for a while as his tummy will be too sore and tight to do it. Get a small plastic bag and put it over his feet before pulling them on. Slide it over and then take the bag off! A tip from a nurse and works a treat πŸ˜‰

 

Once the catheter comes out, that will feel so much better for him. 

 

Steve

User
Posted 25 Mar 2022 at 14:58

Hi Steve2812

Have sent you a pm now inbox is cleared.  Thanks for tip with the stockings!  

User
Posted 25 Mar 2022 at 15:10

Day 3 update

Yesterday was tough!  Once he had showered and been to the loo he was shattered so rested.  He needed to catch up on sleep too.  I keep reminding him we were only day 2 yesterday.  He is sleeping ok, although waking early.  Eating what he feels like, small light meals - his appetite is reduced, drinking lots.  He's got used to the catheter and is managing that well (thank goodness for Instillagel).  We have gone from a rose colour to a pale straw πŸ‘  He has found strapping it to his inner thigh is better than lower down his leg - he feels less constricted.  Prune juice working its magic along with lactolose and senna πŸ‘Š.  He is doing gentle walks at the mo, up and down the garden and drive.  Not ventured far yet.  All in all today is a much better day and he is feeling brighter.  He has no pain, just the puncture wounds are uncomfortable.  Getting the stockings on and off is like a Krypton Factor Challenge - thanks Steve2812 for the tip - will try that.  So all in all not too bad at all.  His emotions are all over the show which again is to be expected, but I think he is handling it all very well.  It's major surgery which cant be underestimated.  Catheter out all being well next Thursday (thanks for the tips OhDear) and results in 6 weeks time.  One step at a time.  

Thanks all for your support, will pop in again and let you know how we are getting on x

User
Posted 27 Mar 2022 at 21:37

I did message you to see how things were going but your in box was full. How are YOU feeling ? My husband said when he was recovering it was all about him and no one asked about me his carer! 
Im hoping he is doing okay too. 

User
Posted 28 Mar 2022 at 15:25

Feeling tired a number of days/weeks after the surgery is to be expected and I certainly didn't regain my pre-operation energy levels until at least 3 after my surgery. As has been said, your husband has undergone major surgery and the damage on the inside is at least 10 times worse than that seen on the outside. Feeling tired is natures way of telling  you to rest and  sleeping is when most of the repair work takes place. I am sure your husband will feel better/more confident when he has had the catheter removed though as I mentioned in a private message that is likely to create new problems ( Incontinence for a number of weeks/months). My continence improved from less than 1% straight after the catheter was removed, to around 70%  a few hours afterwards to 99.99% within 2 months.

Onwards and upwards to infinity as was once said

 

Ivan

 

User
Posted 28 Mar 2022 at 18:49
Hi all

Thanks for your support. Yesterday was good but today not so good. The catheter is making him so sore despite the instillagel and OH believes there may be a bit of discharge from penis so our amazing GP has prescribed antibox which I collected before pharmacy closed. Better to be safe than sorry eh? Wounds healing nicely, just a bit tender but not painful. Sleeping when he needs to. Let’s hope the catheter can come out on Thursday 🀞

User
Posted 28 Mar 2022 at 18:53

thanks Ivan. I think he is doing amazingly well, but I am his biggest fan. It’s been a bumpy ride at times, as we knew it would be. It’s major surgery so each day (or hour) can be different. Once the catheter is removed as you say he will have new challenges. onwards and upwards 🀞

 

Originally Posted by: Online Community Member

Feeling tired a number of days/weeks after the surgery is to be expected and I certainly didn't regain my pre-operation energy levels until at least 3 after my surgery. As has been said, your husband has undergone major surgery and the damage on the inside is at least 10 times worse than that seen on the outside. Feeling tired is natures way of telling  you to rest and  sleeping is when most of the repair work takes place. I am sure your husband will feel better/more confident when he has had the catheter removed though as I mentioned in a private message that is likely to create new problems ( Incontinence for a number of weeks/months). My continence improved from less than 1% straight after the catheter was removed, to around 70%  a few hours afterwards to 99.99% within 2 months.

Onwards and upwards to infinity as was once said

 

Ivan

 

User
Posted 28 Mar 2022 at 18:56

thank you I have sent you a pm.

Originally Posted by: Online Community Member

I did message you to see how things were going but your in box was full. How are YOU feeling ? My husband said when he was recovering it was all about him and no one asked about me his carer! 
Im hoping he is doing okay too. 

 
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